End of Life Care and Decision-Making
Summary
The Guideline is particularly relevant for situations where the patient may lose
decision-making capacity before their wishes have been determined. It is intended to
provide useful advice for NSW Health staff about a process for negotiating end of life
decisions. It also contains information on specific issues such as children and young
people, artificial hydration and nutrition, and Advance Care Directives. The Guideline
also recommends minimum standards for documentation of decisions about
withholding, or withdrawal of, treatment, and dispute resolution for patients, families
and staff.
Document type
Guideline
Document number
GL2021_004
Publication date
08 April 2021
Author branch
Health and Social Policy
Branch contact
(02) 9424 5944
08 April 2026
Policy manual
Not applicable
File number
Status
Active
Functional group
Clinical/Patient Services - Critical Care, Governance and Service Delivery
Applies to
Public Health Units, Local Health Districts, Board Governed Statutory Health
Corporations, Chief Executive Governed Statutory Health Corporations, Affiliated
Health Organisations, Community Health Centres, Dental Schools and Clinics, Public
Hospitals
Distributed to
Public Health System, Divisions of General Practice, Government Medical Officers,
NSW Ambulance Service, Private Hospitals and Day Procedure Centres
Audience
All Area Health Services;Affiliated Health Organisations;NSW Ambulance
Service;Local Health Districts and Networks
Guideline
Secretary, NSW Health
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NSW HEALTH GUIDELINE SUMMARY
END OF LIFE CARE AND DECISION-MAKING
GUIDELINE SUMMARY
Dying patients can be any age and are cared for in many settings including emergency
departments, intensive care units, hospital wards, palliative care units, paediatric wards,
residential aged care facilities, supported disability accommodation and the home. This
Guideline provides useful advice for NSW Health staff about the process for navigating
complex end of life decisions wherever that care is delivered.
NSW Health places a high priority on health practitioners working collaboratively with
patients, their families and carers, as well as each other, throughout all phases of end of
life care. This guideline sets out a process for reaching end of life decisions, in a way
that safeguards both patients and health practitioners, through open and compassionate
communication, appropriate treatment decisions and fairness.
KEY PRINCIPLES
Building consensus
A large part of this document focuses on building consensus, particularly where patients
do not have the capacity to engage in the decision-making process about the role of life-
sustaining treatment for themselves.
Respect for life and care in dying
A primary goal of medical care is preservation of life, however when life cannot be
preserved, the goal is to provide comfort and dignity to the dying person and to support
the person’s family and/or carers in doing so.
The right to know and to choose
People relate to death and dying differently, often based on personal experience,
culture and history.
Appropriate withholding and withdrawal of life-sustaining treatment
The goals of care shift to ensuring comfort and dignity, whereby withholding or
withdrawal of life-sustaining medical interventions are often appropriate in the best
interests of the patient or in accordance with a patient’s Advance Care Directive (ACD).
A collaborative approach to care
The person responsible, families, carers and health practitioners have an obligation to
work together to make compassionate decisions for patients who lack decision-making
capacity.
Transparency and accountability
In order to preserve the trust of those receiving health care and to ensure that decisions
are fairly made, the decision-making process, the decisions made and likely outcomes
should be clear to the participants and accurately documented.
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NSW HEALTH GUIDELINE SUMMARY
Non-discriminatory care
Everyone in NSW should be able to access quality end of life care when it is needed,
regardless of their geographic location, age, condition, disability, socio-economic needs,
cultural and religious background, gender identity, sexual orientation or languages
spoken.
Rights and obligations of health practitioners
Adults have a right to accept or decline care and health practitioners have a
responsibility to practice in accordance with community and professional norms and
legal standards.
Continuous improvement
Health practitioners must strive for ongoing improvement in standards of end of life
care.
USE OF THE GUIDELINE
This Guideline is designed for use by NSW Health staff who are part of the treating
team involved in end of life care.
This Guideline should form the basis of local policy on end of life decision-making,
considering local conditions and resources Local policy development is recommended
for:
minimum standards for documentation of decisions about withholding, or
withdrawal of, treatment
providing culturally safe and responsive end of life services
dispute resolution for patients, person responsible, families, carers and staff.
Local policy may expand on this Guideline by, for example, identifying relevant persons
or contacts within the hospital/local health district/specialty health network who may
serve certain roles.
REVISION HISTORY
Version
Approved by
Amendment notes
April-2021
(GL2021_004)
Deputy Secretary
and Chief Health
Officer
Full review on the revised document
March-2005
(GL2005_057)
Deputy Secretary
and Chief Health
Officer
Initial Document
ATTACHMENTS
1. End of Life Care and Decision-Making: Guideline
End of Life Care and Decision-Making
GL2021_004
Issue date: April-2021
Contents page
NSW HEALTH GUIDELINE
CONTENTS
1 BACKGROUND ........................................................................................................................ 1
1.1 About this document ......................................................................................................... 1
1.2 Key definitions ................................................................................................................... 1
1.3 Developing local policy ..................................................................................................... 4
1.4 Training and education ..................................................................................................... 4
2 PRINCIPLES ............................................................................................................................. 5
2.1 Building consensus ............................................................................................................. 5
2.2 Respect for life and care in dying ....................................................................................... 5
2.3 The right to know and to choose ........................................................................................ 5
2.4 Appropriate withholding and withdrawal of life-sustaining treatment ................................. 5
2.5 A collaborative approach to care ........................................................................................ 5
2.1 Transparency and accountability ...................................................................................... 6
2.6 Non-discriminatory care ...................................................................................................... 6
2.7 Rights and obligations of health practitioners .................................................................... 6
2.8 Continuous improvement .................................................................................................... 6
3 ADVANCE CARE PLANNING ................................................................................................. 7
4 FOUNDATION FOR SOUND DECISION-MAKING ................................................................ 8
4.1 The changing context of treatment decisions at end of life ............................................. 8
4.2 The relationship between the treating team/health practitioner and the patient with
decision-making capacity .......................................................................................................... 9
4.3 The collaborative nature of the treating team .................................................................. 9
4.4 A consensus-building model when the patient has no decision-making capacity ......... 10
4.5 Accountability .................................................................................................................. 11
4.6 Importance of palliative care ........................................................................................... 12
5 DEVELOPING A MANAGEMENT PLAN .............................................................................. 13
5.1 Process of end of life decision-making ........................................................................... 13
5.2 Assessment .................................................................................................................... 14
5.3 Disclosure ....................................................................................................................... 15
5.4 Documenting discussions ............................................................................................... 15
5.5 Documenting a consensus decision ............................................................................... 16
6 RESOLVING DISAGREEMENTS .......................................................................................... 17
6.1 Disagreement in the treating team ................................................................................. 17
6.2 When a patient’s person responsible, family and/or carer disagree with a patient’s
decision ................................................................................................................................... 17
6.3 Inappropriate requests for continuing treatment ............................................................ 18
6.4 Requests for withholding or withdrawal of treatment by the patient .............................. 19
6.5 Options for resolving disagreement ................................................................................ 19
6.5.1 Timing and discussion ........................................................................................ 19
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6.5.2 Second medical opinion ...................................................................................... 19
6.5.3 Time-limited treatment trial ................................................................................. 19
6.5.4 Facilitation ........................................................................................................... 20
6.5.5 Patient transfer .................................................................................................... 20
6.5.6 Guardianship Division of the NSW Civil and Administrative Tribunal ................ 20
6.5.7 Legal intervention ................................................................................................ 20
7 SPECIFIC ISSUES ................................................................................................................. 21
7.1 Euthanasia/assisted suicide ........................................................................................... 21
7.2 Neonates, children and young people ............................................................................ 21
7.3 Culturally appropriate and responsive care at end of life............................................... 23
7.4 Appropriate use of analgesia and sedation .................................................................... 23
7.5 Artificial hydration and nutrition ...................................................................................... 23
7.6 Making Resuscitation Plans ........................................................................................... 24
7.7 Advance Care Directives (ACDs) ................................................................................... 25
7.8 Organ and tissue donation ............................................................................................. 25
7.9 Post-coma unresponsiveness (PCU) ............................................................................. 26
7.10 Emergency treatment ..................................................................................................... 26
8 RESOURCES AND CONTACTS ........................................................................................... 27
8.1 Implementation checklist and compliance self-assessment .......................................... 29
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1 BACKGROUND
1.1 About this document
This Guideline is to provide information for NSW Health staff who are part of the treating
team involved in end of life care. This may include medical specialists, general
practitioners, nurses, Aboriginal Health Workers and allied health professionals such as
social workers, physiotherapists, dieticians and occupational therapists.
Dying patients can be any age and are cared for in many settings including emergency
departments, intensive care units, hospital wards, palliative care units, paediatric wards,
residential aged care facilities, supported disability accommodation and the home. This
guideline provides useful advice for NSW Health staff about the process for navigating
complex end of life decisions wherever that care is delivered.
NSW Health places a high priority on health practitioners working collaboratively with
patients, their families and carers as well as each other throughout all phases of end of
life care. These phases include from the time a patient is diagnosed with a terminal
illness up to their imminent death. Care is dependent on open and early communication
in an environment of trust. This Guideline sets out a process for reaching end of life
decisions, in a way that safeguards both patients and health practitioners, through open
and compassionate communication, appropriate treatment decisions and fairness.
Ideally, patients determine their own decisions for end of life care. Some aspects of this
Guideline apply to these patients who have decision-making capacity or have
documented their wishes. Often, however, patients lose decision-making capacity before
their wishes are determined. In those situations the treating team, person responsible,
family and/or carer need to collaborate on a plan of care that considers the patient’s best
interests: reflecting the patient’s wishes and values and avoiding both inappropriate over-
and under-treatment. This guideline is relevant to all situations where a consensus-
building approach is recommended.
The End of Life and Palliative Care Framework 2019-2024 (the Framework) sets out the
vision and future direction for palliative and end of life care for people across NSW. The
Framework describes how people and services can work together to provide accessible,
high quality end of life and palliative care.
1.2 Key definitions
Advance Care Directive
An Advance Care Directive (ACD) is a way a person can document what healthcare
treatments they would like to have or refuse, should they find themselves in a position
where they are unable to make or communicate decisions about their treatment and care.
In NSW, an ACD can be spoken or written. There is not a specific form that must be
used. An ACD can only be made by an adult with decision-making capacity and if it is
valid, it must be followed. Health practitioners and persons responsible have no authority
to override a valid ACD. Further information about making an ACD can be found online at
- https://www.health.nsw.gov.au/patients/acp/Publications/acd-form-info-book.pdf
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Advance Care Plan
An Advance Care Plan can be made by the individual or together with people that they
trust and/or who are important to them. Where the individual is not able to make
decisions, the Advance Care Plan can be made by their family/carer with a health
practitioner. An Advance Care Plan is not a legal document.
Advance Care Planning
Advance Care Planning involves a person thinking about what care they would like
should they find themselves in a position where they cannot make or communicate
decisions about their treatment or care. It can include the person talking with family,
carers and/or health practitioners, developing an Advance Care Plan, appointing an
Enduring Guardian or making an Advance Care Directive.
Capacity
The ability for a person to make their own decisions is called ‘capacity’. When a person
has capacity, they can make their own decisions about things that happen in their life.
Broadly speaking, a person has capacity to make a particular decision, when they are
able to do all of the following:
understand the facts involved
understand the main choices
weigh up the consequences of the choices
understand how the consequences affect them
communicate their decision.
It is important to always presume that a person has the capacity to make all decisions for
themselves. Capacity is decision specific, which means if there is doubt about a person’s
capacity then there will need to be an assessment of the person’s capacity for each
decision.
Carer
A carer is an individual who provides unpaid, informal support and care to a family
member, friend or neighbour who needs assistance because of disability, terminal illness,
chronic illness and/or mental illness. The carer may or may not live with the individual.
End of life
For the purposes of this Guideline, this refers to the timeframe when a patient is clearly
approaching the end of their life and is living with/impaired by a life-limiting illness. This
includes:
the patient’s last weeks or days of life, when deterioration is irreversible and
when a patient is assessed as likely to die in the next 12 months
End of life care
End of life care is delivered to improve the quality of life for people who have a life-
limiting illness, as well as their families and carers. It ensures the appropriate support and
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palliative needs are provided to the person so they live as well as possible until their
death.
Enduring Guardian
An Enduring Guardian is the person an individual legally appoints to make decisions
about their health and lifestyle in the event they cannot make these decisions for
themselves.
Family
Family is an all-encompassing term that refers to the people who are closest to the
individual and with whom the individual has an ongoing, personal relationship. This may
or may not include immediate biological family, family of acquisition, blended families,
same sex-partners, and family and friends of choice.
Life-sustaining treatment
Life-sustaining treatment is any medical intervention, technology, procedure or
medication that is administered to forestall the moment of death, whether or not the
treatment is intended to affect life-threatening diseases or biological processes. These
treatments may include, but are not limited to, mechanical ventilation, artificial hydration
and nutrition, cardiopulmonary resuscitation, dialysis or certain medications (including
antibiotics).
Palliative care
The World Health Organisation defines palliative care as an approach that improves the
quality of life of patients and their families facing the problems associated with life-
threatening illness, through the prevention and relief of suffering by means of early
identification and assessment and treatment of pain and other problems, physical,
psychosocial or spiritual.
Patient
For the purposes of this document, the patient describes the person receiving end-of-life
care in a setting such as an emergency department, intensive care unit, hospital ward,
palliative care unit, paediatric ward, residential aged care facility, supported disability
accommodation or the home.
Person responsible
If a person is not capable of consenting to their own treatment, the health practitioner
should seek consent from their ‘person responsible’. This is required by the Guardianship
Act 1987.
Under section 33A(4) of the Guardianship Act 1987, there is a hierarchy of people who
can be the person responsible. A person responsible is one of the following people in
order of priority:
i. Guardian – an appointed guardian (or enduring guardian) who has been given the
right to consent to medical and dental treatments, or
ii. Spouse or partner – if there is no guardian, a spouse, de-facto spouse or partner
where there is a close continuing relationship, or
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iii. Carer – if there is no spouse or partner, an unpaid carer who provides or arranges
for domestic support on a regular basis, or
iv. Relative or friend – if there is no carer, a friend or relative who has a close
personal relationship, frequent personal contact and a personal interest in the
person’s welfare, on an unpaid basis.
The person responsible for a child (a person less than 18 years) is the person having
parental responsibility (within the meaning of the Children and Young Persons (Care and
Protection) Act 1998) for the child. However, if the child is in the care of the Minister, then
the Minister is the person responsible, or if the child is in the care of the Secretary then
the Secretary is the person responsible. These circumstances are determined by the
Children and Young Persons (Care and Protection) Act 1998.
Treating team
The treating team is the multidisciplinary team of health professionals involved in the
patient’s management and care. This may include medical specialists, general
practitioners, nurses, Aboriginal Health Workers, Aboriginal Health Practitioners,
Aboriginal Liaison Officers, allied health professionals such as social workers, physio
therapists, dieticians and occupational therapists, lived experience professionals, patient
advocates, chaplains or pastoral care workers.
Treatment limitation decisions
Treatment limitation decisions are those that involve the reduction, withdrawal or
withholding of life-sustaining treatment.
1.3 Developing local policy
This Guideline should form the basis of local policy on end of life decision-making,
considering local conditions and resources. Local policy should be developed in
collaboration with key stakeholders including consumer representatives, Aboriginal
Health Workers and Aboriginal Health Practitioners. Local policy development is
recommended for:
minimum standards for documentation of decisions about withholding, or
withdrawal of, treatment
providing culturally safe and responsive end of life services
dispute resolution for patients, person responsible, families, carers and staff.
Local policy may expand on this Guideline by, for example, identifying relevant persons
or contacts within the hospital/local health district/specialty health network who may
serve certain roles.
Quality improvement activities for end of life care should be developed to guide future
practice including self-audits and other sources of performance feedback such as
complaints and commendations.
1.4 Training and education
NSW Health has online training modules for health practitioners on My Health Learning
which aim to raise awareness and competency in end of life conversations and good
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practice. All relevant and current modules are part of the End of Life Learning Pathway,
including the ‘Introduction to Advance Care Planning’ and ‘SHAPE: End of Life
Conversations’.
2 PRINCIPLES
2.1 Building consensus
A large part of this document focuses on building consensus, particularly where patients
do not have the capacity to engage in the decision-making process about the role of life-
sustaining treatment for themselves. Consensus building is the most inclusive process for
determining what is the best treatment for that individual, at that time, and in that place. A
consensus view about appropriate treatment is ethically justified when it is in accordance
with the guiding principles outlined below.
2.2 Respect for life and care in dying
A primary goal of medical care is preservation of life, however when life cannot be
preserved, the goal is to provide comfort and dignity to the dying person and to support
the person’s family and/or carers in doing so. Health practitioners will work collaboratively
to ensure services and support are culturally safe and responsive to the unique needs of
the person where they may require additional support in accessing end of life care.
2.3 The right to know and to choose
People relate to death and dying differently, often based on personal experience, culture
and history. Everyone receiving healthcare has a right to be informed about their
condition and their care options and have access to good quality health information, in a
format and language that is culturally responsive and that they can understand. People
have a right to accept and decline life-sustaining treatment. Health practitioners have an
ethical and legal obligation to acknowledge and honour these stated choices and
preferences.
2.4 Appropriate withholding and withdrawal of life-sustaining treatment
Appropriate end of life care should aim to provide the best possible treatment and care in
line with the patient’s wishes and values at that time. The goals of care shift to ensuring
comfort and dignity, whereby withholding or withdrawing life-sustaining medical
interventions are often in the best interests of the patient or in accordance with a patient’s
Advance Care Directive (ACD).
2.5 A collaborative approach to care
The person responsible, families, carers and health practitioners have an obligation to
work together to make compassionate decisions for patients who lack decision-making
capacity. They need to take into account previously expressed patient wishes where
these wishes are known or are documented in an ACD or Advance Care Plan. Health
practitioners in the treating team play a role in fostering a collaborative approach and
ensuring support is culturally safe and responsive to the unique needs of the patient and
their family and/or carers.
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2.1 Transparency and accountability
In order to preserve the trust of those receiving health care and to ensure that decisions
are fairly made, the decision-making process, the decisions made and likely outcomes
should be clear to the participants and accurately documented. Information and guidance
in accessible formats (e.g. designed for culturally and linguistic diverse audiences, Easy
Read versions, or with pictures) should be made available.
Easy Read and video resources for people with disability regarding going to hospital,
care coordination, palliative care and Advance Care Planning can be found at
https://www.health.nsw.gov.au/disability/covid-19/Pages/going-to-hospital.aspx.
Health practitioners must engage professional health care interpreters for patients,
person responsible, families and carers who are not fluent in spoken English, hard of
hearing, or living with disability. More information can be found at
www.health.nsw.gov.au/multicultural/Pages/health-care-interpreting-and-translating-
services.aspx.
2.6 Non-discriminatory care
Everyone in NSW should be able to access quality end of life care when it is needed,
regardless of their geographic location, age, condition, disability, socio-economic needs,
cultural and religious background, gender identity, sexual orientation or languages
spoken. Therefore, treatment decisions at the end of life should be non-discriminatory
and dependent only on factors that are relevant to the patient’s medical condition, values
and wishes.
Treatment decisions may be unintentionally or unknowingly discriminatory because a
person has a disability or mental illness. This may occur when assumptions are made
about people with disability, or when their needs and preferences are not adequately
taken into account. Further guidance can be found at
https://www.health.nsw.gov.au/disability/Pages/policies-and-guidelines.aspx
2.7 Rights and obligations of health practitioners
Adults have a right to accept or decline care and health practitioners have a responsibility
to practice in accordance with community and professional norms and legal standards.
For children see 7.2.
Health practitioners are under no obligation to provide treatments that are futile. That is,
treatment that is unreasonable and offers negligible prospect of benefit to the patient’s
medical condition.
2.8 Continuous improvement
Health practitioners must strive for ongoing improvement in standards of end of life care.
End of life care and palliative care requires continuing education and support for those
health professionals caring for dying patients, their person responsible, families and/or
carers This should include feedback for consumers.
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3 ADVANCE CARE PLANNING
Health outcomes for patients, their families and carers improve when they can talk
through their concerns, preferences, choices and decisions with health practitioners.
Ideally, these conversations start when the patient is well and should continue throughout
their health care journey. The patient’s wishes, values, goals and priorities should be
documented to help their person responsible, family, carer and health practitioners make
decisions about the patient’s end of life care when they are no longer able to do so.
Currently in NSW, people can plan for end of life care by:
discussing their preferences for life-sustaining treatment with their person
responsible, family and/or carer while they are well
writing an Advance Care Directive (ACD) if they are an adult with decision-making
capacity, noting that an ACD can also be oral (which should be documented)
formally appointing and/or informing an Enduring Guardian (where the person has
decision-making capacity)
developing an Advance Care Plan (ACP) in conjunction with their health
practitioners, person responsible, family and/or carer
The critical element for effective advance care planning by any of the above approaches
is discussion between the patient and their person responsible, family and/or carer, as
well as their treating team.
An ACP may be developed by the individual (regardless of their capacity) and/or by their
person responsible, family and/or carer on their behalf, in consultation with their treating
team. An ACP is not a legal document.
However, an ACD in NSW can only be made by an adult with decision-making capacity.
An ACD can be spoken or written in NSW. It does not need to be on a specific form to
record their wishes. This means that all ACDs must be respected, including ACDs from
other states and territories.
NSW Health has developed the Making an Advance Care Directive package which
includes an ACD form and an information booklet to help complete the form.
The My Health Record allows a person to upload an ACP and/or an ACD as part of their
health information under the ‘Advance Care Planning Documentation’ section. Guidance
on access procedures for ACDs/ACPs on My Health Record in both emergency and non-
emergency settings can be found on the NSW Health website at
https://www.health.nsw.gov.au/patients/acp/Pages/access-procedures-mhr.aspx.
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4 FOUNDATION FOR SOUND DECISION-MAKING
The following section discusses a number of factors that support a sound process for end
of life decision-making. The process itself is discussed in more detail in section 5.
These factors include:
respecting the principles of this Guideline
the changing context of treatment decisions at the end of life
the relationship between the treating team/health care professional and the patient
with decision-making capacity
holistic assessment and the importance of multi-professional input including allied
health reviews, interpreting services, disability supporter or advocate, and
Aboriginal liaison
the collaborative nature of the treating team/health practitioners and the patient
and/or person responsible, family and/or carer
supported decision-making tools as required, for example support to access and
understand the information and resources needed to make a decision for
themselves. This is particularly relevant for people with disability.
the consensus building model where the patient has no decision-making capacity
accountability
the importance of palliative care.
4.1 The changing context of treatment decisions at end of life
Because planning for end of life care usually takes place in the context of ever-changing
circumstances, it is useful to follow the cyclic feedback process as set out in section 5
(see 5.1).
One reason for this constant change is the difficulty in predicting, with certainty, an
individual’s response to a particular treatment or prognosis of their disease. Often life-
sustaining treatment will be commenced while further investigations are carried out, or
information sought, in order to make a more accurate prognosis. When all available
information has been collected the appropriateness of continuing the treatment is
reviewed with the treating team/health practitioner, patient and/or their person
responsible, family and/or carer.
The patient’s wishes may also change as they develop an appreciation of their clinical
condition. This process of review, decision-making and treatment trial may be repeated a
number of times as the patient’s condition improves or deteriorates. These decisions are
often based on probabilities, rather than certainties.
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4.2 The relationship between the treating team/health practitioner and the
patient with decision-making capacity
Under NSW law, every person has the right to the presumption of capacity. Capacity or
lack of capacity should not be assumed on the basis of a patient’s diagnosis or condition.
Any concern about a person’s capacity to understand or participate must be assessed on
an individual basis.
A person’s decision-making capacity may be adversely affected by chronic or acute
illnesses. As a result, a patient’s decision-making capacity may vary over time and
therefore necessitate periodic re-assessment.
Disability and mental illness can also impact a person’s decision-making capacity. Health
practitioners should consider how the patient can be supported in their decision-making.
An adult patient with decision-making capacity may accept, refuse or withdraw life-
sustaining treatment, even where that decision may lead to serious deterioration in health
or death. It is crucial that the patient is properly informed of the consequences of refusing
such treatment. A patient may make choices about treatment consistent with their own
values, even where these values differ from those of the treating team/health practitioner,
their person responsible, family and/or carer. A patient with decision-making capacity has
autonomous decision-making authority and the treating team/health practitioner acts in
an advisory capacity to the patient, enabling the patient to make choices regarding their
treatment options.
It is essential that health practitioners continue to keep patients (and/or their person
responsible, family and/or carer) informed about their medical condition as they improve
or deteriorate, and as the patient’s decision-making capacity fluctuates. Patients should
be given the opportunity to participate in treatment decisions consistent with their
decision-making capacity.
Note that where the patient is a young person (between 14 and under 18 years) their
consent may be sufficient, in most cases, but it is good practice to include the parents or
guardian in the decision-making and consent process.
Where a minor has insufficient understanding (likely 13 years and under) consent from a
parent or guardian must be obtained they should be included in the process.
The general principles regarding consent for medical treatment apply in relation to the
treatment of dying patients, as they do for other patients. Health practitioners must be
familiar with NSW Health Consent to Medical and Healthcare Treatment Manual
(Consent Manual) .
4.3 The collaborative nature of the treating team
The treating team involved in end of life care, either through direct decision-making or in
supportive roles, may include medical specialists, general practitioners, nurses,
Aboriginal Health Workers, Aboriginal Health Practitioners, Aboriginal Liaison Officers,
allied health professionals such as social workers, physiotherapists, dieticians and
occupational therapists, lived experience professionals, patient advocates, chaplains or
pastoral care workers.
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Individual members of the treating team may have closer or prolonged involvement with
the patient and may be aware of the patient’s values and wishes, and what is culturally
appropriate. Other team members may be involved periodically on an ‘as needed’ basis
or more involved in how the patient is psychologically or spiritually coping with illness.
Each member may bring valuable perspectives and information to the process of
planning care and their collaborative involvement should be actively pursued. Junior
nurses and doctors, as well as general practitioners working with community-based
patients, should not be excluded where end of life decisions are considered.
Reaching agreement within the treating team about appropriate care is an important
initial step in a collaborative approach, particularly where the patient no longer has
decision-making capacity.
Nurses play a significant role in providing clinical and social information to the patient,
person responsible, family and/or carer in the potential initiation of treatment limitation
discussions and as managers of the dying process. Nurses are included in the
collaborative process whereby the treating team develops a management plan with
patients and/or their person responsible, families and/or carers.
4.4 A consensus-building model when the patient has no decision-making
capacity
Where the patient lacks decision-making capacity the treating team should confirm if
there is a valid Advance Care Directive (ACD) so that decisions can be made in
accordance with the patient’s ACD.
When a patient lacks decision-making capacity and it is not an emergency, all health
practitioners are required by law to consult and seek consent to treatment from the
‘person responsible’.
Where the patient has a legally appointed guardian (including Enduring Guardians), they
can make decisions about treatment being withheld or withdrawn only if they have been
expressly given such a power in their appointment. In this case, the guardian is the
decision-maker and the health practitioner acts in an advisory capacity, just as they
would have if the patient had decision-making capacity. It is important for health
practitioners to review the terms on which guardians are appointed.
In the absence of a suitably authorised guardian, other persons responsible do not have
the express power to consent to withholding or withdrawing treatment, but they should be
consulted when end of life decisions are being made.
A person responsible can provide a consent to active medical treatments such as pain
management and/or end of life care symptoms.
When the patient cannot be supported to make their own informed decision about their
care, a consensus-building approach to end of life decision-making is recommended.
This collaborative process aims to draw on the person responsible, family and/or carer
and treating team’s knowledge and understanding of the patient’s personal values and
medical condition.
A consensus is sought within the treating team, and between the treating team and family
and/or carer, about a plan of care that is as consistent with the patient’s wishes and
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values as much as possible. This approach supports the family and/or carer in the
degree of involvement they wish to have.
The approach of shared decision-making is recommended due to the risk that sole
decision-making by any one party may fail to achieve the best possible treatment
decision. A consensus approach with appropriate involvement from both treating team
and family and/or carer:
avoids placing a senior treating clinician in a position of assuming a patient’s
wishes concerning end of life treatment without the participation of others, or
withholding or withdrawing treatment
is consistent with a desire by many patients that if they are not able make
decisions then their family and/or carer can be involved in end of life decisions
reduces the potential of imposing possible additional stress on a family and/or
carer who may perceive that they carry the burden of decision-making and which
may later contribute to feelings of guilt
minimises inappropriate input to decisions where concerns arise about conflict of
interest within a family or a family or carers understanding of medical care.
A consensus approach can be facilitated by a senior treating clinician and members of
the treating team through the person responsible, family and/or carer conferencing to
discuss the illness, prognosis, goals of care and potential outcomes, impacts of
decisions, patient’s values and wishes.
The treating team and senior treating clinician should offer recommendations for the
patient’s management plan based on their understanding of the patient’s medical
condition and prognosis. They should allow time for discussion and reflection, while
continuing to work with, and support, the family and/or carer and reach a consensus
decision.
The person responsible, families and carers should be provided with a contact point for
appropriate members of the treating team, hospital or community-based staff after the
patient’s death to discuss unanswered questions. This may be beneficial in eliminating
guilt or uncertainties.
Elements that are critical to the success of this approach and options for resolving
disagreements are discussed in section 5.
4.5 Accountability
As the leader of the treating team, the senior treating clinician is accountable to the
patient, the person responsible, the family and/or carer, the employing health authority,
and ultimately the courts, for the process whereby a consensus about end of life
decisions is sought and the reasonableness of the planned course of action.
Following the process set out in this Guideline and developing adequate documentation
of that process will ensure that the senior treating clinician and the treating team meet the
obligations required for accountability in end of life treatment decisions.
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4.6 Importance of palliative care
The provision of palliative care for patients should be introduced early and continue
throughout all phases of a life-limiting illness, especially during the dying phase. The
treating team should ensure services and support are culturally safe and responsive to
the unique needs of the patient, family and/or carer.
This care should encompass optimising the quality of life, reducing suffering, promoting
dignity, providing relief from pain and other distressing symptoms, as well as providing
emotional and psychological support in preparation for death.
During discussions about end of life care, patients can raise other issues such as relief of
psychological suffering, spiritual care, choice around place of death, and addressing any
unresolved issues that they may have.
Offering support systems help the person responsible, family and/or carer cope during
the patient’s illness. This could include personal and home care, counselling and respite
as well as offering support through their own bereavement and grieving journey.
The specific details of palliative care should be documented (See section 7.3).
More information on providing accessible, high quality end of life and palliative care can
be found in the End of Life and Palliative Care Framework 2019-2024.
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5 DEVELOPING A MANAGEMENT PLAN
Planning end of life care is an iterative or cyclic process based on holistic,
comprehensive assessment, disclosure, discussion and consensus building with the
patient and/or their person responsible, family and/or carer and the treating team.
This process can take place over a short period, such as hours, where the patient
suddenly or unexpectedly deteriorates, but it can also extend over weeks or months. End
of life discussions may be included in discharge plans to facilitate follow up and
discussion with their General Practitioner (GP). This may be particularly relevant for aged
and frail people, or those living with a chronic condition or receiving palliative care.
The key points in each step of this process (section 5.1) are discussed in the following
sections.
5.1 Process of end of life decision-making
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5.2 Assessment
A sudden or unexpected deterioration, or uncertainty about prognosis, usually requires
efforts to stabilise the patient so that a complete assessment can be undertaken and
potential reversibility of the condition be established.
Development of an end of life management plan should be considered and discussed if:
the patient’s recovery is uncertain
if the treating clinician asks him or herself, ‘Would I be surprised if this patient
were to die in 6 to 12 months?’ and the answer is ‘No’
if the patient clinically deteriorates or is anticipated to do so
or if the patient’s condition is considered high risk.
The treating team should undertake this assessment at the earliest appropriate time. Life-
sustaining treatment that has already commenced may be subsequently withdrawn if it is
deemed no longer appropriate upon assessment of the patient’s wishes or clinical
condition. The treating team should document all of the information used to support their
decision-making process.
If there is reasonable doubt within the treating team about the medical assessment, they
should seek advice from other senior clinicians, if possible, with experience in the
condition. Any second opinions should be documented.
Assessment should also include evidence of the patient’s preferences and values where
available from the patient, as documented in their ACD, or by their person responsible,
family and/or carer if the patient has no capacity.
A patient’s preferences for life-sustaining treatment are not static over time and should be
regularly reviewed by the treating team. Patient decision-making capacity may be
impacted by many things including demoralisation, distress, or depression. Effective
management of a patient’s situation and symptoms should be addressed in conjunction
with the decision-making process.
A patient’s preferences regarding direct communication and information must be
respected, documented and accessible to the treating team. The patient also has the
choice to nominate someone to receive information on their behalf, or to exclude family
members and/or a carer from discussions, decision-making processes and access to
information.
The desire for autonomous decision-making or the preference for a collective or
delegated approach to end of life decisions may vary among patients from culturally
diverse or religious backgrounds. This aspect should be explored on an individual basis
to avoid inappropriate clinical decisions and poor interaction with patients, their families
and/or carers. The treating team should engage with appropriate cultural health workers,
such as Aboriginal Health Workers, to ensure services and support are culturally safe
and responsive to the unique needs of the patient, their family and/or carer.
The informal use of untrained interpreters such as other family members or a carer
should be avoided when communicating essential or clinical information. Failure to work
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with a health care interpreter or engaging an untrained interpreter (including family or
friends) poses a risk to both the patient and the health practitioner.
Failure to demonstrate any improvement over an extended period or deterioration in
clinical condition should generate discussion and questions about further initiation or
continuation of treatment. The patient, the person responsible, family and/or carer, or the
treating team may initiate such discussions.
5.3 Disclosure
Accurate information in Plain English should be provided to patients, their person
responsible, families and/or carers so they can participate meaningfully in decisions
about end of life care. Where required, this information should be provided in a culturally
appropriate way, for example engaging with Aboriginal Health Workers to create a
culturally appropriate end of life pathway. Information should be provided in accessible
formats if needed including translations into languages other than English, Easy Read or
pictures.
Assistive technology (e.g. touch screen devices, Text-To-Speech software/apps,
dedicated speech devices, etc) may facilitate communication between the treating team
and the patient, person responsible, family and/or carer. This is particularly relevant when
communicating with a person with disability.
Uncertainty about prognosis or likely response to treatment should be communicated to
patients, their person responsible, their families and carers. Prognostic information is
ideally given by a health practitioner who is respected as an expert.
Patients, the person responsible, families and/or carers may be caught off guard when
conversations about the goals of care and possible treatment limitations occur suddenly,
very late, without preparation, or when they have not received a balanced picture of the
patient’s prognosis.
Patients, their person responsible, families and/or carers should be engaged in open
communication about possible outcomes early in treatment, especially where the patient
is seriously or critically ill. This is to prevent unrealistic expectations about what can be
achieved with treatment.
It is important to confirm that the patient, family and/or carer has understood the
discussion. Early, honest and regular communication can also help create the trust
needed for shared decision-making and to defuse tension.
5.4 Documenting discussions
Discussions with patients, their person responsible, families and/or carers about
treatment limitation should ideally occur in stages over a period of time, preferably while
the patient can determine the appropriateness of treatment or its withdrawal. It is
recommended that nursing staff, or other key members of the treating team are present
in these discussions to support and facilitate communication between the treating team,
the person responsible, family and/or carer.
Strategic opportunities for the treating team to initiate or revisit discussion about end of
life care may include recent hospitalisation with severe, progressive illness or repeated
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recent admissions, enquiries from the patient or family and/or carer about palliative care
or an expression by the patient of a wish to die.
Having the same person/s communicate with the patient, the person responsible, family
and/or carer on behalf of the treating team throughout this process can be useful, as
minor differences in explanation of the patient’s condition or progress can seem to
patients, families and carers like major disagreements or discord in the team. Ideally, this
health practitioner should be experienced in conducting such discussions, should have
earned trust before treatment limitation is discussed, and should be able to discuss
prognostic information.
The phrases ‘do everything’ or ‘do nothing’ are unproductive and should be avoided.
Such terminology is a barrier to informed discussion regarding the benefits and burdens
of certain courses of action. Where limitation of life-sustaining treatment is planned,
ongoing care with the goal of providing comfort to the patient should be emphasised with
the patient and their person responsible, family and/or carer.
Some local health districts and specialty health networks within NSW Health have
established local clinical ethics committees. These committees variously provide
education and local policy advice regarding ethical issues arising in their facilities and
ethics case consultation. Should an impasse occur, a local clinical ethics committee
could bring multidisciplinary expertise together with the person responsible, family and/or
carer and the treating team to explore and assist with resolution.
5.5 Documenting a consensus decision
The agreed management plan for end of life care, and decisions about the use of life-
sustaining treatment within that plan, should be documented and conveyed to all
members of the treating team as well as the patient, their person responsible, family
and/or carers This may include discussions and shared planning with health practitioners
in other care settings, for example, with a patient’s GP if they have chosen to die at
home.
Such communication may be difficult where many staff care for the patient, however
adequate documentation may assist in this regard. Where possible, alerts should be
added regarding a patient’s treatment preferences into their hospital record or ACD. The
treating team (under the supervision of the senior treating clinician) is responsible for
summarising discussions held with the patient, person responsible, family and/or carer
and treating team in the patient notes.
These notes must clearly state:
medical facts leading to the decision, including prognosis
those involved in the discussion and if it was a family meeting
the patient’s wishes, where known and if documented in an ACP or ACD
goals of treatment and care
details about medical treatments to be provided, timeframe before review, or
details about treatments to be withdrawn / withheld.
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Management plans may cover a shorter or longer period of time, depending on the
clinical situation of the patient. Decisions that involve withholding treatment should be
regularly reviewed in accordance with fluctuations in the patient’s condition. A change in
the appropriateness of withholding treatment (such as cardiopulmonary resuscitation)
needs to be re-documented (see also section 7.5).
Other appropriate treating team members should continue to document other aspects of
care that will be maintained or enhanced, such as comfort measures.
Thorough documentation of decision-making processes and subsequent care enables
greater transparency and accountability in the care provided and ensures that all health
practitioners fulfil their professional and legal obligations.
6 RESOLVING DISAGREEMENTS
In most situations where a patient is dying, the patient, person responsible, family and/or
carer and treating team readily come to an agreement on appropriate medical
management.
However, disagreements can arise regarding treatment limitation decisions or other
aspects of end of life care. Most disagreements between the treating team, the patient or
the person responsible can be prevented by early, sensitive and proactive
communication that clarifies goals of treatment, possible outcomes and the patient’s
values and wishes. That is where early engagement of the Specialist Palliative Care
Team, culturally appropriate support services, and Aboriginal Health Workers may help.
6.1 Disagreement in the treating team
In circumstances where one team member disagrees with the others, the team should
consider the basis for disagreement and seek the opinions of independent professionals
from the same discipline as the disagreeing member. If support for this position cannot
be found, it may be appropriate for the dissenting member(s) not to continue being
involved in the treating team. As in other areas of clinical practice, a health practitioner
may exercise conscientious objection and not participate in a practice which is contrary to
their professional opinion or moral beliefs.
Counselling or other psychological support may be appropriate where disagreement
occurs about the appropriateness of treatment limitation. This is particularly relevant for
health practitioners and allied health workers who may be more acutely aware of the
patient’s distress.
6.2 When a patient’s person responsible, family and/or carer disagree with
a patient’s decision
The wishes of the adult patient with decision-making capacity are paramount. If the
patient’s expressed wishes regarding active treatment, refusal or withdrawal of treatment
prior to loss of decision-making capacity are known, then these wishes prevail over the
wishes of the person responsible, family and/or carer.
Disagreements between the patient and their person responsible, family and/or carer
may arise for many reasons including if they are not properly informed of the patient’s
wishes. Every effort should be made to respect the patient’s preference regarding
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communicating this information to the person responsible, family and/or carer, with
services and support made available.
In cases where the clinician believes family and/or carers are making inappropriate
requests and they suspect abuse of older people then they should consult their local
protocols. Further information can be found in NSW Health Policy Directive Identifying
and responding to abuse of older people (PD2020_001).
6.3 Inappropriate requests for continuing treatment
At times a patient, person responsible, family and/or carer, may request a test or
intervention that appears unreasonable or inappropriate to the treating team. Such a
request may appear inappropriate in the following scenarios:
where the patient’s condition continues to deteriorate even with optimal
therapeutic interventions
where tests will not assist with the patient’s goals or management
where the treatment would not be successful in producing the clinical effect for
which it is ordinarily used
where the treatment might successfully produce a clinical effect, but still fail to
serve important patient goals such as independence from life-support devices,
survival in order to leave hospital, or improvement from permanent
unconsciousness.
A focus should be kept on the patient and their wishes where they are documented in an
ACD. All requests for continuing treatment should be given due consideration before
decisions about the appropriateness of treatments are made. Any request should lead to
a review of the diagnosis and prognosis and the margins of certainty in each aspect.
Health practitioners should initially endeavour to explain to the patient, person
responsible, family and/or carer why they think the desired test or treatment is
inappropriate.
The person responsible, families and/or carers of patients without decision-making
capacity who request continued treatment in such situations might have unrealistic
expectations about what can be achieved.
More often though, a person responsible, family and/or carer will ask for ‘everything to be
done’ if they are not ready to accept the patient’s inevitable death. This situation may be
exacerbated when the family and/or carer is not aware of the patient’s ACD and/or early
engagement in treatment planning prior to the onset of the dying process (see 5.2) or
where guilt may be associated with fractured or distant relationships within the family.
Where the treating team considers these requests for life-sustaining treatment to be of
negligible clinical benefit, consent to withhold or withdraw treatment is not required.
However, consultation is important in determining what is in a patient’s best interests.
The efforts of nursing and medical staff, pastoral care workers, social workers or other
counsellors should be directed to supporting the person responsible, family members and
carers and assisting them to resolve their difficulties in accepting the reality of the
patient’s impending death.
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In such circumstances, it is preferable to continue treatment until conflict with relatives is
resolved. However, time-critical situations pose extremely difficult choices and
challenges. Clinicians may be required to seek additional support from their hospital
administrators or executive when resolving such conflict (see 6.5).
6.4 Requests for withholding or withdrawal of treatment by the patient
Unrelieved pain, suffering or depression may influence a patient’s request to withhold or
withdraw treatment. Under such circumstances, it is appropriate to:
consider a patient’s ACD if documented,
explore the patient’s feelings possibly with the assistance of a qualified
professional (for example, palliative care or acute pain service), and
address any issues that may be resolvable.
It may be appropriate to:
request a palliative care consultation for symptom management and assessment,
negotiate an agreed plan of continuing treatment with the patient and schedule
further discussion in the near future, while acknowledging that sustained wishes
for treatment refusal in the competent patient are ultimately paramount.
6.5 Options for resolving disagreement
The following approaches are possible avenues for resolving disagreements in the end of
life care setting. Not all options will be available in all clinical contexts. However, the
simple approaches should be taken first.
6.5.1 Timing and discussion
Unless decisions about life-sustaining treatment need to be made urgently, giving the
person responsible, families and/or carers time to come to terms with the impending
death of the patient may be sufficient to resolve outstanding issues. The treating team
should consider scheduling time for further discussion with them or others providing
support.
6.5.2 Second medical opinion
The patient, person responsible, family and/or carer may request a second medical
opinion. Offering a second opinion may also be appropriate if the person responsible,
family and/or carer is displaying anxiety or uncertainty regarding diagnosis or prognosis.
It is the responsibility of the senior treating clinician to facilitate any second medical
opinion. This opinion should be from a health practitioner with relevant expertise in the
patient’s condition and who is demonstrably independent from the treating team.
6.5.3 Time-limited treatment trial
A time-limited treatment trial may be undertaken to clarify prognostic uncertainty or
resolve disagreement about prognosis, provided the trial is in the best interests of the
patient or consistent with their wishes. It may be advisable to clarify with the treating
team and person responsible, family and/or carer what treatments are being commenced
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or continued, the criteria for assessment and the timeframe for review before possible
continuation or withdrawal.
6.5.4 Facilitation
Involvement of a third party may assist in clarifying and addressing the concerns of the
patient, person responsible, family and/or carer, or in finding agreement where an
impasse has occurred between the person responsible, family, carer and the treating
team. The third party may be a senior member of the hospital administration and/or
hospital executive team, a senior health practitioner, or another person agreed upon by
those involved. The person should have sufficient seniority, be respected by all parties,
and be demonstrably independent of the treating team. Where available, a clinical ethics
committee could be accessed to explore and assist with resolution.
6.5.5 Patient transfer
If these steps have not resolved the situation and a dispute remains between the patient,
person responsible, family and/or carer and the treating team or the relationship has
broken down, then the practicality of transferring the care of the patient should be
investigated with those involved. This should be facilitated by the responsible senior
treating clinician in consultation with the patient, person responsible, family and/or care.
The transfer could be to another institution or home, or to another suitable treating
clinician within the same institution.
6.5.6 Guardianship Division of the NSW Civil and Administrative Tribunal
The Guardianship Division of the NSW Civil and Administrative Tribunal (the Tribunal)
has the jurisdiction to make orders as to whether medical/dental treatment of a patient
should proceed if the patient lacks the capacity to provide their own consent.
Any application for such an order must set out evidence of the person’s diminished
capacity, the proposed treatment, details of alternative treatments (if any), and the nature
and degree of any significant risks associated with either the proposed treatment or the
alternatives.
The Tribunal can also hear applications seeking the appointment of a guardian to make
ongoing medical and/or end of life decisions for a patient with diminished capacity. A
family member/friend of the patient can be appointed as guardian, or alternatively, the
Public Guardian of NSW.
More information about the Tribunal can be found at https://www.ncat.nsw.gov.au/
6.5.7 Legal intervention
The NSW Supreme Court has jurisdiction to hear matters relating to treatment limitation
decisions. If the child or young person is under 18 years of age, then the Family Court of
Australia has jurisdiction. Senior treating clinicians or their delegates may consider
initiating a Court action when they are unsure if the proposed treatment or treatment
limitation is in accordance with their duties, and if all of the above steps have failed to
resolve their concerns.
Before initiating a Court action, the senior treating clinician should have:
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contacted the Ministry of Health’s Legal and Regulatory Services Branch to
discuss the matter
informed the hospital executive of the proposed approach
obtained a second specialist’s medical opinion in writing
received advice from their health service’s executive team
discussed this course of action with the person responsible, family and/or carer.
Where this option is taken, continued consultation should take place with the person
responsible, family members and/or carer to assist in clarifying the issues and to
determine whether a legally acceptable solution in the best interests of the patient can be
reached.
The Ministry of Health’s Legal and Regulatory Services Branch can be contacted at (02)
9391-9606 or by email at NSWH-le[email protected].gov.au.
Persons responsible, family members or carers may decide to independently initiate a
Court action if they have concerns regarding end of life decisions where the patient lacks
decision-making capacity. Persons responsible, family members or carers should be
specifically informed that they have this option.
7 SPECIFIC ISSUES
7.1 Euthanasia/assisted suicide
Euthanasia and assisted suicide involve deliberate acts or omissions that are undertaken
with the intention of ending a person’s life.
In NSW both euthanasia and assisted suicide are crimes under the Crimes Act 1900
(NSW). However, the following is permitted in NSW:
The refusal of any or all life sustaining treatments by a person with decision-
making capacity
Competent patients to prepare an advance refusal of treatment for a time of future
incapacity
Decisions by doctors, in consultation with the guardian/ person responsible for
incapacitated patients, to withhold or withdraw treatments that will not benefit the
patient, to permit a peaceful death.
NSW Health strongly endorses patient autonomy and is committed to empowering
patients in their choices, where the request is within the existing ethical and legal
framework.
7.2 Neonates, children and young people
End of life decisions in neonates and children present many challenges and difficulties.
This difficulty is because, unlike adults, neonates and children are often unable to
understand or fully understand choices concerning life-sustaining treatments or functional
states and the implications for decision-making. Children are also less likely to have
expressed values that would be known by the family and inform treatment decisions.
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Parents and the treating team may nevertheless consider that continued treatment is not
appropriate where the child’s condition is intolerable to the child or where the child is
dying.
Older children and young people (that is, between 14 and under 18 years) may not make
treatment limitation decisions solely by themselves, even where their capacity to make
other medical decisions is not in doubt. Older children should be involved in discussions
with their parents and the treating team regarding their prognosis and treatment, as
appropriate to their level of understanding, emotional maturity and in accordance with
their best interests.
Multidisciplinary support, as described below, may be necessary where a child’s
expressed wishes about end of life treatment is contrary to those of their parents.
Neonates, children and young people cannot have an ACD, however they can document
their wishes in an ACP.
In addition to the strategies discussed in 6.5, the following strategies may be useful
where the treating clinician and parents or guardian differ in their assessment of what is
in the best interests of the patient, or where the parents disagree with each other:
Appropriate multidisciplinary support for parents should be provided. The
understandable anxieties of parents in relation to treatment limitation decisions
may be complicated by potential feelings of guilt and responsibility for the child’s
death. This support may ultimately involve working with parents to refocus their
hopes and goals.
Assessment by a clinician with skills in working with distressed families (e.g.
mental health practitioner, social worker, family therapist) that tries to understand
the processes occurring in the family, especially as they may relate to the
disagreement.
Appointment of an appropriately qualified professional, such as a counsellor, in the
treating team to advocate independently for the interests of the child.
The consensus-building approach to treatment limitation decisions outlined in this
Guideline at 4.4 is also applicable in this setting. Where the process fails to bring a
consensus about the appropriateness of treatment limitation, resolution will require
application to the Court.
Where the child is subject to a care order conferring parental responsibility to the Minister
under the Children and Young Persons (Care and Protection) Act 1998 (NSW) the law
treats the Minister as the child’s parent.
The treating clinician should consult with the Minister about the appropriateness of life-
sustaining medical treatment by contacting the Department of Communities and Justice.
Treatment should continue to be provided, time permitting, while consultation takes
place. Disagreements between the treatment team and the Minister or Minister’s
delegate about the appropriate course of action should be resolved by the same
processes as apply to other parents, as outlined in this guideline.
There are three Specialist Paediatric Palliative Care Services in NSW that provide a
consultative service to health care teams, community staff and parents and/or carers to
support them in their location of choice/goals of care. These services are provided by the
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Sydney Children’s Hospitals Network (The Children’s Hospital at Westmead and the
Sydney Children’s Hospital, Randwick) and John Hunter Children’s Hospital, Newcastle.
Further information on the services and their contact details can be found at
www.nswppcprogramme.com.au.
7.3 Culturally appropriate and responsive care at end of life
Culturally appropriate care at end of life for people is supportive of personal, family and
community needs. This may include palliative care in the home, return to community,
cultural or ritual activities.
Aboriginal Health Workers, Aboriginal Health Practitioners and Multicultural Health
Workers can work with the patient, family and/or carers to inform the various service
providers about their specific needs.
The Lesbian, Gay, Bisexual, Transgender or Intersex (LGBTI) community may face
additional barriers when accessing appropriate and responsive care at end of life. This
may include experiences of discrimination in health care and other settings, and a lack of
recognition of LGBTI families. As a result, it may be important for LGBTI patients to
prepare clear advance care planning documents to protect their legal rights and end of
life care preferences, particularly if their family and/or carer are not aware of or do not
respect their sexual orientation, gender identity, intersex status or relationships.
People with disability may require additional supports to enable them to understand
death, dying and end of life care, and to effectively make decisions about appropriate and
responsive care. This may include the use of assistive technology, translated resources,
or disability supporters/advocates. It is important not to underestimate the capacity of
people with disability to understand and make decisions about their own health care.
Diagnostic overshadowing – attributing the symptoms of a disease to the disability and
thereby failing to diagnose or treat it – can be a significant barrier to the timely
introduction of palliative and end of life care. Where possible, the treatment team should
include input from disability and mental health specialists.
7.4 Appropriate use of analgesia and sedation
Analgesia and sedation should be provided in proportion with clinical need by whatever
route is necessary for the primary goal of relieving pain or other unwanted symptoms.
Such administration will not be unlawful provided the intention of the clinician or
authorised prescriber is the relief of symptoms, even if the medical practitioner is aware
that the administration of the drug might also hasten death.
7.5 Artificial hydration and nutrition
Use of artificial hydration and nutrition is an intervention with its own possible burdens
and discomforts, for example, those related to having tubes in situ or regularly replaced.
Withdrawal of artificial hydration and nutrition, like the withdrawal of other medical
interventions, can be seen as a withdrawal of treatment decision that may be made in
accordance with this Guideline. It is recognised that the provision of artificial hydration
and nutrition may be a particularly sensitive matter for some in the community who
believe that it must be continued, unless specifically refused by the patient. The offering
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of food and fluids should be part of the care of dying patients as appropriate to their
clinical condition or wishes, unless it presents a risk to the patient.
These decisions can be made and documented by the treating team which can include
speech pathologists and/or dietitians who are skilled at providing assessment and
guidance in a palliative care framework. Speech pathologists are also skilled at providing
education and strategies on safe feeding strategies to minimise aspiration and/or
discomfort to maximise quality of life.
7.6 Making Resuscitation Plans
Making a Resuscitation Plan is one step in the process of planning quality end of life
care. It is a medically authorised order to use or withhold resuscitation measures and
document other aspects of treatment relevant at end of life.
Resuscitation Plans are intended for patients 29 days and older in all NSW Public Health
Organisations, including acute facilities, sub-acute facilities, ambulatory and community
settings, and NSW Ambulance. For patients under 29 days of age, the Paediatric
Resuscitation Plan may be used to guide discussions.
NSW Health Resuscitation Plans are not valid for community patients under the medical
care of a doctor who is not a NSW Health staff member. General Practitioners with
admitting rights are considered NSW Health staff. Decisions to withhold CPR and other
resuscitation measures seek to avoid unwanted, excessively burdensome or insufficiently
beneficial interventions for patients at the end of life. At some point in the course of life-
limiting illness, a shift in the focus of care away from aggressive intervention and towards
a palliative approach is often the agreed outcome.
The rationale for withholding resuscitation includes:
Where there is a clearly stated, adequately informed and properly documented or
verbally expressed refusal by a person with decision-making capacity. An ACD
and ACP can inform decisions recorded in the Resuscitation Plan.
Where the person has no capacity to make this decision, there is an adequately
informed and properly documented decision to withhold resuscitation by the
Attending Medical Officer in consultation with the person responsible, family and/or
carer.
Where the Attending Medical Officer judges that resuscitation offers no benefit or
where the benefits are small and overwhelmed by the burden to the patient.
Not having a Resuscitation Plan does not necessarily mean that resuscitation is a default
action that must be applied in all situations. A medical officer’s clinical judgement should
be used where resuscitation is manifestly inappropriate and/or the patient is deceased.
The general principles and process guiding the completion of a Resuscitation Plan are
the same for children as for adults. Though the Paediatric Resuscitation Plan is not
intended for use in Neonates (patients under 29 days), it may be used to guide
discussions. For more information on Resuscitation Plans refer to NSW Health Policy
Directive Using Resuscitation Plans in End of Life Decisions (PD2014_030) .
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7.7 Advance Care Directives (ACDs)
The NSW Supreme Court has said that valid ACDs must be followed as they are part of a
person’s right to make decisions about their health. Health professionals and persons
responsible have no authority to override an ACD.
The following conditions should be met before ACD treatment decisions are followed.
The ACD:
is intended to apply to the clinical circumstances that have arisen
must be sufficiently clear and specific to guide clinical care
should be made by an adult patient and should reflect their wishes, rather than the
wishes of another person, and
there must not be any reasonable evidence to suggest that the ACD does not
reflect the current intentions of the patient, or was made as a result of undue
influence
It is best practice, but not legally necessary, that the ACD:
is periodically reviewed by the patient, for example after an illness, or following a
change in health status
should be available at the time decisions need to be made, for example, by
ensuring the likely person responsible and primary healthcare provider have a
copy and any of its revisions
be signed and witnessed, if it is written
is developed by a patient with involvement or assistance from a medical
practitioner.
If there is doubt about whether the ACD applies, or if there are concerns that the ACD is
not valid, health treatment should be provided until clarification can be sought from the
Supreme Court. The Ministry of Health’s Legal and Regulatory Services Branch should
be contacted in these circumstances. If after hours, the clinician should elevate the
matter to the Local Health Districts (Districts) executive who can contact the Ministry of
Health’s General Counsel.
See section 3 of this Guideline for more detailed information about ACDs and advance
care planning.
7.8 Organ and tissue donation
Specialist organ donation doctors and nurses in hospitals will help identify potential organ
donors and engage in donor conversations with the person responsible, family and/or
carers. Where patients have registered their wishes about organ donation on the
Australian Organ Donor Register (https://donatelife.gov.au/) or documented them in their
ACD or previously informed their person responsible, family or carer, the treating team
should inform the specialist organ donation team in their hospital.
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7.9 Post-coma unresponsiveness (PCU)
The withholding or withdrawal of treatment for a severely brain-injured patient is a
decision that should be made in accordance with this Guideline. Diagnosis of PCU is
difficult and usually protracted, often taking months to confirm. The National Health and
Medical Research Council has released ethical guidelines for the care of people in post-
coma unresponsiveness or in a minimally responsive state. It is available at
www.nhmrc.gov.au.
7.10 Emergency treatment
In circumstances where treatment is necessary as a matter of urgency, a treating
clinician or health may provide medical treatment without consent (from either the patient
or the person responsible). This may occur when a patient’s condition suddenly
deteriorates and his or her wishes or likelihood of recovery are unknown. This treatment
may be to:
save the patient’s life,
prevent serious damage to the patient’s health; or,
to alleviate significant pain or distress, except in cases of special medical
treatment.
Special medical treatment is treatment requiring additional consent or approval pursuant
to legislation.
This treatment should be no more than is reasonably required in the best interests of the
patient. This does not apply, however, if the patient, when competent, has unequivocally
refused the provision of such treatment in the applicable circumstances and the clinician
is satisfied on the available evidence that such a direction has been made.
This emergency principle also applies to children and young people if the treatment is
required urgently to save the life or prevent serious damage to the health of the child or
young person.
Any treatment provided without consent in an emergency must be documented in the
patient’s Health Record.
More information on consent is available from the NSW Health Consent to Medical and
Healthcare Treatment Manual (Consent Manual)http:///.
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8 RESOURCES AND CONTACTS
NSW Ministry of Health
1. Policy Directive on Using Resuscitation Plans in End of Life Decisions
www.health.nsw.gov.au/PDS/pages/doc.aspx?dn=PD2014_030
2. Information on access procedures to Advance Care Planning and/or Advance
Care Directives on My Health Records
www.health.nsw.gov.au/patients/acp/Pages/access-procedures-mhr.aspx
3. Information on Advance Care Planning for people with mental illness: a
comprehensive guide
www.health.nsw.gov.au/patients/acp/Pages/comprehensive-guide.aspx
4. Information on the Introduction to Advance Care Planning
www.heti.nsw.gov.au/education-and-training/courses-and-programs
5. NSW End of Life and Palliative Care Framework 2019-2024
www.health.nsw.gov.au/palliativecare/Publications/eol-pc-framework.pdf
6. Information and resources on palliative care:
www.health.nsw.gov.au/palliativecare/Pages/easy-read-resources.aspx
7. NSW Paediatric Palliative Care Services
www.nswppcprogramme.com.au/
Sydney Children’s Hospitals Network (The Children’s Hospital at Westmead and
the Sydney Children’s Hospital, Randwick)
www.schn.health.nsw.gov.au
John Hunter Children’s Hospital, Newcastle
www.hnekidshealth.nsw.gov.au/site/jhch
8. Information on Supporting Health Professionals in Advance Care Planning and
End of Life (SHAPE) Conversations
www.heti.nsw.gov.au/education-and-training/courses-and-programs
9. Information on requirements for organ donation and autopsy
www.health.nsw.gov.au/organdonation/Pages/policies-and-guidelines.aspx
www.health.nsw.gov.au/humantissue/Pages/default.aspx
10. Information on informed consent requirements
NSW Health Consent to Medical and Healthcare Treatment Manual
www.health.nsw.gov.au/policies/manuals/Pages/consent-manual.aspx
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11. NSW Health Care Interpreting Services
www.health.nsw.gov.au/multicultural/Pages/health-care-interpreting-and-
translating-services.aspx
Further information can be downloaded through NSW Health website
www.health.nsw.gov.au/pubs
Other websites
12. NSW Planning Ahead Tools
https://planningaheadtools.com.au/
13. Clinical Excellence Commission’s End of Life Program
www.cec.health.nsw.gov.au/keep-patients-safe/end-of-life-care
The AMBER Care Bundle
www.cec.health.nsw.gov.au/keep-patients-safe/end-of-life-care/amber-care
Last Days of Life
www.cec.health.nsw.gov.au/keep-patients-safe/end-of-life-care/last-days-of-life
14. Agency for Clinical Innovation’s Palliative Care Network
https://aci.health.nsw.gov.au/networks/palliative-care
15. Information on Palliative Care Standards and Guidelines:
www.pallcare.org.au/publications/index
16. Information on capacity and the Capacity Toolkit:
www.justice.nsw.gov.au/diversityservices/Pages/divserv/ds_capacity_tool/ds_capacit
y_tool.aspx
17. Information about Guardianship and the NSW Trustee and Guardian
www.tag.nsw.gov.au/guardianship
18. Information on guardianship and the role of the Guardianship Division of the NSW
Civil and Administrative Tribunal
www.ncat.nsw.gov.au/ncat/how-ncat-works/ncat-divisions-and-appeal-
panel/guardianship-division.html
Fact sheet on consent to medical treatment, and Fact sheet on person responsible
https://ncat.nsw.gov.au/ncat/publications-and-resources/fact-sheets/guardianship-
division-fact-sheets.html#Consent3
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8.1 Implementation checklist and compliance self-assessment
Organisation / Facility:
Assessed by:
Date of Assessment:
Key Requirements
Not
commenced
Partial
compliance
Full
compliance
Notes:
Notes:
Notes:
Notes:
Notes:
Notes: